beet as medicine in thalassemia

Hi Sis ,
Thanx for your concerns , you're soo caring .. yeah , i m keep searching for the food veges or fruits those are good for thals , n i will keep sharing all that i will find ... i believe's in natural suplements like ftuit and veges , you mention abou t apples and pear , its a good addition in my list ...  Guava , Beetroot , Tea , Green Tea , Olive , Orange etc...etc....  soo , thanx for a super advice ....
i m eagerly  waiting for your project , bcoze i know that would be a great informative project .... soo m waiting for that. ...

Take Care
Umair

I love beets.

Now I do have one observation, which some may agree or disagree. I often hear about vegetables or fruits that may help in raising the hemoglobin in thalassemia major. Now please remember I am only talking about the hemoglobin inducer vegetables and fruits, the effects of vegetables and fruits, overall, in balancing the diet and other capabilities (such as helping the diabetes etc.) to help the overall health of thals is proven, and we are not discussing that effect. However, the vegetables and fruits as hg inducer, I am a little pessimistic.

I see thal major as a defect in a car engine that is missing two pistons, whereas it needs four pistons (if it is a four stroke car), no matter how much oil you put and ignite the self, the engine will not run to produce power, simply because it is missing the two pistons. My friends or relatives tell me a lot of "Home made remedies" to induce hg, which may have temporary effect (I don't know) or may have an effect in raising fetal hg to little extent, I remain pessimistic. I know two pistons are missing.

Not sure if I am on the right track in thinking or just a little pessimistic.

Umair

I admire so much your presistance in being healthier and i am sure you are. you are an inspiration umair


Canadian family

Not sure if I am on the right track in thinking or just a little pessimistic.

I can understand your point very well, it is like a damaged machine, whatever you do it will always give a bad quality product, neverthe less trying these natural remedies is not a bad idea as long as it is in the safe side. We talked a lot about the resveratrol and how it is proven to induce the fetal HB, the effect of the fermented papaya as a strong antioxidant, the carao, ... and there could be other things that we know nothing about yet so trying with limits is not really a bad idea

manal

These are significant for thals but I won't say it increases Hb. Folic acid, calcium, potassium, vitamin A and antioxidant properties are all things beneficial to thals.

Oops, I got my answer from Andy's response. But coming back to my question, any response.

Canadian Family,

I think that the effects of diet and supplements on hg itself may be very small and subtle for transfusing thal majors.  Their positive effects may be in helping transfused blood last longer and in helping with the oxygen carrying capacity (not sure  ).  
Also, the positive effects can be helpful for people in using the hg they have more effectively - for example watermelon (& L-carnitine) and other nitric oxide inducers can help the body better adapt to changing hg levels by allowing the arteries to deal with the changes in blood volume.  

Another factor is that the effects of these things can be individual as well.  While the nutrients will benefit everyone - the effect on hg may be different for different people.  Even hg inducers like hydroxyurea have different levels of effectiveness in different people for unknown reasons.

I think that small and incremental benefits can have a lot of value for thal intermedias and maybe some benefits for thal majors as well.  After all the key difference between thal majors and some intermedias (in my understanding) is the ability to make fetal hg - therefore anything that would increase fetal hg should benefit thalassemia.  I don't know if the fact that the marrow is suppressed in thal majors prevents fetal hg production (which is why some doctors question the use of folic acid in thal majors).  

Andy, do you agree with this?

Sharmin

Canadian Family,

In your example, only 2 pistons are firing. But, with proper maintenance, you can keep those 2 pistons working at an optimum. This is the same thing with thalassemia. It is very important to optimize what one does have, regardless of what else they are missing. Most thal majors do produce some hemoglobin but not enough to survive and many "majors" could actually be classified intermedia because even without transfusions, they can maintain a hemoglobin level of 6 or higher. Maximizing this potential is one goal by providing the body with the essential nutrients to build good red blood cells that will have a longer life. B vitamins, vitamins C and E, and magnesium are all important to the health of red blood cells. Also, we want to create an environment that will help the transfused red cells to last a bit longer. In addition, we want to build a stronger circulatory system that will not deteriorate as the patient ages. Nitric oxide plays a key role here, and is why L-carnitine is recommended (only available by prescription in Canada, thanks to the big brother mentality that persists within the health authority. Unfortunately for thals. L carnitine is widely used by body builders, leading to confused bureaucrats treating it the same way they treat steroids, even though there is no connection). Hemoxide, which was mentioned again recently is also of interest as a nitric oxide producer and may have value in combating blood pressure in general in addition to the helping to prevent the pulmonary hypertension prevalent in thal intermedia and also commonly found in majors and I suspect, minors also. (Dr John Wood seemed very intrigued by this latter possibility when I mentioned it in Singapore). These are some examples on how the circulatory system is improved by supplements, even though there may be no change in Hb levels. Helping the body to optimize what it can do, can make a big quality of life difference for thals and extend their lives. Even though some pistons aren't working, we should have a goal of maximizing the potential of those pistons that do, and providing the constant maintenance to keep the 2 good pistons in good working order.

When I see the success Sharmin has had by using supplements and the strong endorsement by Dr Vichinsky of supplements, and the good condition of Manal's son, in spite of low Hb, I can have no doubt about the value of supplements and what they can do to improve the health and quality of life of thals. While these methods and the good nutrition found in natural foods may have only a minimal effect on Hb levels, they do provide what is needed to counter the losses due to the stresses of thalassemia and also provide the nutrients necessary to optimize the health. Just as a non-thal can benefit from a healthy nutritious diet, so can thals and in my view, because the deck is stacked against thalassemics, they more than non-thals need to do everything possible to optimize their health.

@ Manal ,
Thank you sis for encouragment ... it means alot for me to keep trying my best to stay in fight ...

@ all buddies ,
Thanx for your informative replies , thats wat i want's (whenever i start's thread like this one ) to have a discussion and debate that raise the points pros and consof anything. ... i dnt want to believe on anything witout having a debate on that , bcoze if you are going to start anyting  debate assure's you that you are doing right ...

thank you all for your response ...
umair

This forum is great.

Thank you Andy, Sharmin and Manal. I agree with your points, but its the debate like Umair has said, which is the key to the knowledge.

I feel so energized just by visiting this forum.

You are welcome Canadian family, any news about your visit to the bone clinic?
manal

OK, I still wonder what L-carnitine is in Dutch. Does someone have an idea?
Last time when I was in The Body Shop I found out how we call wheat grass. I forgot the Dutch name, because I didn't write it down  . They use it in shampoo.
Tomorrow I will be able to buy the supplements that Andy suggest in the pk def. topic. I haven't been out of the house on my own for three weeks. Because I am still ill and the low hgb. We think I got Sinusitis (Dutch name is less scary). I got a headache all the time and it get more worse when i must stoop.. To get to the point: I am a bit sceptical like CF. I want to believe in supplements, but that food can help to keep your hgb up; I don't know.
I dont believe in anti-oxidants.